February 10, 2014

Back in the Saddle

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , , , , , , at 4:15 pm by autismmommytherapist

J Horse 1

The call came as I was preparing dinner, straining gluten-free spaghetti through a colander for me and my youngest boy. I have to pause a conversation about Lego Star Wars to pick up the phone, and as I glance down I see it’s my mom’s cell, so I press “talk.”

After a brief greeting I ask her how Justin’s horseback riding lesson went, and I hear a slight pause, which my imagination rapidly fills in for me. I immediately worry that Justin doesn’t like this new stable, the one with the trainer who I’m hoping will get him to the Special Olympics this fall. My thoughts are no more dire than that.

What my mom says instead takes my breath away momentarily, shocking me as this has never occurred in the almost six years Justin has been riding. “He fell off the horse hon, but he’s okay” my mom reassures me, and then continues with “and damned if he didn’t want to get right back on.”

Knowing my boy, that doesn’t surprise me at all.

Apparently Justin’s horse was startled by another equine friend in the ring, and fortunately my son slid from the saddle right into the waiting hands of his trainer, with only the indignity of his bottom hitting the ground. In the seconds my mom contemplated whether she should risk going inside or not she said he simply stood up, grabbed his trainer’s hand and pulled her toward the mounting block. With the other hand he pointed straight at his horse.

My boy doesn’t need to talk to make himself understood.

Once more I make sure he’s okay, hear his excited “eeeeee” in the background as I wrap up my conversation with my mom so Zach and I can eat our carbs. I tell my youngest that Justin fell off his horse for the first time but wanted to get right back on.  Zach responds that his brother is very brave, and I smile at him in agreement, telling Zach that I think he shares this same trait with his sibling. There is a request for the parmesan cheese I’ve forgotten to put on the table, and as I make my way to the refrigerator I am hit by the magnitude of what has just happened. My son has fallen off a horse. He didn’t cry, fuss, or try to leave. Instead, he got right back in the saddle.

The truth is, that’s what this family does every single day.

I have two children with autism, one severe, one mildly affected. To my everlasting pride (and relief) they are both safe, productive, and happy. I attribute this bounty in part to great teachers and aides, excellent therapists, an involved family, and of course, time and maturity. All of these ingredients have coalesced into a recipe for success, an outcome I am grateful for every day.

But if I’m perfectly honest, it’s falling down and getting right back up again that has been perhaps the most important ingredient in this family, a trait I’m proud to say we all share. I’ve seen this occur after time with Justin, whether it was watching him learn how to ride a bike, conquer an educational game on the computer, or, and most difficult for him, see him manipulate his mouth to form coveted consonants. This kid never gives up, and I don’t believe it’s a trait one can teach. I believe in him it’s innate, a force of nature which propels him on in all his endeavors, one I’m very grateful he inherited from his obstinate and purpose-filled parents.

Truly, the apple doesn’t fall far from the tree.

Soon I am being pestered for cookies from Justin’s equally brave brother, and my reverie is broken as I search for more carbs in our pantry. I’m asked often how our family has made things work, how we’ve managed to create a palatable existence despite the demands of an often difficult disorder. I am loathe to give generic advice to families as everyone’s situation is so different, but here is one universal truth I feel comfortable passing along. No matter what issue you’re facing, if you fall down from the weight of it try your best to brush yourself off, and keep on going. It is the one constant that has always worked for this family.

And my most heartfelt wish is that it works for you too.

January 27, 2014

There But For the Grace of God

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , at 12:35 pm by autismmommytherapist

Disney and Halloween 2013 012

I battle what seems like gale-force winds to open the door to the movie theater, and Justin sneaks his hand out from between my intertwined fingers, making a mad dash for the popcorn. I clutch at his coat and manage to halt him in his tracks, and after a bit of cajoling am able to propel him over to the fairly long line for tickets. After a brief skirmish he thankfully relents, and we make our way over to the dividers, my son sharing his enthusiasm for movies and popcorn with a loud “eeee” to everyone around him.

I smile to see him so happy, and notice two young boys with their mother staring raptly at Justin, who is literally bouncing up and down in time with his vocal pronunciations. I watch as one boy pulls on his mother’s sleeve and points at my son, and I see her whisper something in his ear. Our eyes meet and I smile, because it’s hard not to notice Justin when he’s this loud, and she tentatively smiles back. I’m about to turn away and attend to my boy, when unfortunately I regard what I like to call her “look chaser.”

It’s pity. Blatant and pure pity. And I am enraged.

Fortunately, for the better part of Justin’s life I’ve been spared this indignity, perhaps because we’ve resided in places I feel have an empathy for special needs kids, or perhaps we’ve just been lucky. I am thankful Justin never seems to register these looks, is generally immersed in what he’s doing, usually happy in his surroundings.

I feel his hands on my face as he angles me in for a kiss, which he does dozens of times unprompted throughout the day, and I feel some of my anger melt away. I wish however that I could pull her aside and tell her to save her pity for someone who needs it, because that need surely does not exist here.

If I could pull her aside however, this is what I would say.

Leave your pity at the door. We need your compassion and acceptance, nothing else.

Telling your son to look away from mine does nothing to educate him about differences, and celebration of those differences. Teach him to embrace those with a neurology different than his. This learning begins with you.

My son can’t speak, but he seems to understand almost everything we say and do. Think about how that look of yours could affect him. Imagine if someone looked at your child that way, and he saw it.

My boy, who has severe autism, is a gift, a beautiful, intelligent, loving gift. He’s amazing, and I wouldn’t trade him for the world.

Eventually, the longest line in history ends. I purchase our tickets with one hand restraining Justin and one navigating through my wallet, and we encounter yet another long line for his favorite treat. I notice the family of three has boycotted the snack stands, which leaves me to focus on our carb target, and remember where to find our theater.

Justin’s enthusiasm has been somewhat tempered as food has come into play, and he eagerly follows me to our seats, focused entirely on the butter-laden kernels he will soon consume. I settle us in, but before I dispense with his snack I lean in to kiss him and he smiles, then points to what’s really important.

Food. He is so my son.

I am calm now, and I lean forward before the trailers begin to tell him two more things, sentiments I impart to him on a daily basis, usually multiple times.

I tell my son I love him. I tell him that he is the best boy in the world.

And he is.

January 2, 2014

My State of Reunion

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , , at 2:04 pm by autismmommytherapist

disney 33

Ten years ago this month I brought my first-born in for a routine doctor’s visit to address his reflux, a frequent and unwelcome visitor who had returned to torment my baby. I stood with my diaper-clad seventeen-month-old in a brightly lit, overheated room, anxious to get that magical scrip that would alleviate his discomfort, eager to leave the office and resume our lives.

Twenty minutes later I would stand in the center of that neon-lit waiting room shaking, barely able to dress my child, clutching incomplete articles with the word “autism” prominently displayed in the title in my trembling hands.

Ten years ago, in one minute my world as I knew it ended.

A decade ago I made a promise to myself that I would always tell it like it is, and I would be lying if I didn’t say that at times, the last ten years have been hell. Despite his generally positive, affectionate nature, my eldest child moves through cycles of aggression at least once a year. He is also plagued with OCD which renders him miserable at times, and wreaks havoc in our house.

I’ve also witnessed my second child (one who unlike his sibling appeared to develop typically) relinquish the world of sounds and descend into a foreign world of silence in the space of a few weeks. I watched as he too became victim to serious gastrointestinal issues, held him helplessly for months as diarrhea coursed through his body until the new diet we tried eventually kicked in and alleviated his suffering, much to our profound relief.

I won’t lie to any of you. At times, for both of my children, I could only equate autism with suffering.

At times, there truly was no silver lining.

I occasionally think back to the woman I was ten years ago, wrestling with her child’s diagnosis, and that same girl a half decade ago, as she watched the light as she knew it leave her second son’s eyes. In those instances our lives seemed devoid of hope, empty of promise.

Truly, the only way to go from either place was up.

I won’t ever tell another parent going through an autism diagnosis that it will definitely get better. Nobody, no matter what they tell you, nobody can completely predict the trajectory of a child’s progress at the time he or she is diagnosed. Trust me, Zach’s doctors are stunned that he’s mainstreamed in an inclusion class without an aide, participating in after-school actitivies, has friends (and yes, he’s still autistic.)

I used to see the glimmer of surprise in certain professionals’ faces when my eldest bestowed his frequent kisses on my in an exam room (we use different doctors now), watched their faces register disbelief that a severely affected child could be so loving. The doctors don’t know everything. However, they will probably tell you they do.

So, I won’t promise you that it will all be okay. But I will tell you you might change your definition of okay, and hopefully that will bring you peace.

My youngest son is still on the spectrum, but he believes his life to be one long glorious adventure, and for that I am grateful.

My eldest will never attend college, have a spouse, or live independently. I’ve reconciled myself to the fact that I will always be sad he doesn’t have these choices, yet relieved he seems to have forged a fragile truce with autism, is mostly a joyful, ebullient child, confident in the world he calls his own.

After ten long, arduous years there mostly exists a state of peace in our household, for which I am eternally grateful. This peace has enabled our family to have a full and rich life together.

This hard-won peace has given me back my life too.

After ten years we are finally in a place where I am contemplating part two of my career, feel I can make more time for friends, know I can breathe more easily. I feel as if I’m rediscovering myself, my needs, my wants, what makes me happy. At times I unearth the echoes of that fairly fun girl from ten years past, and I embrace her warmly, remember how her outlook was one where anything was possible.

I’m not there yet. But I’m working on it.

And as we begin a new year, full of wonder, full of promise, my wish for all of you is that this oft-elusive peace will grace your lives, and you will find yourselves once again too.